Wednesday, November 30, 2011

Today has been a day where the only thing I could do was wait and hope that Herman had successfully resubmitted his bid.

If he did then I should get the news quite quickly, Frans was here on 15th November, he sent his bid in right away, and he heard on 25th that his bid won, he got the sale.

Then I heard the customer could choose the supplier, so I made my choice known, Agis informed me that while I may have the right to decide the supplier.

However because I see an occupational therapist, I could not speak for myself; my OT was the one to explain.

Brilliant, so because I am handicapped and see an O.T suddenly I can not speak for myself, what a thing, not really surprising as they are so sexist and discriminatory here.

So I should not be surprised, Maurits was the one to do the talking; this reminds me of when I worked as an agency worker at Euronet, I had completed a network plus course, my ambition was to become network engineer.

Euronet were looking to train up network engineers, my misfortune was to have a manager who didn’t think women could do the job.

He actually told me that men were born engineers; they had it in their genes, shortly after I got another IT helpdesk job.

I never got another opportunity then, this time I will not let myself get bullied by another ignorant bully like Frans

Tuesday, November 29, 2011

Well the good news is that Maurits my occupational therapist has spoken to Agis; they have said that Herman needs to send them a new bid asap.

He needs to write clearly on it, that, the application had already been agreed; I was merely changing the supplier.

That’s great news, it really is, only shame is that it will take some time, maybe a few weeks says Maurits, surely if they already said yes, why can’t it happen quickly.

The answer is no, because they are burocrats, they could not possibly give a quick response not when they can take their time.

I have suggested Herman should remove the voice recognition and any mention of the Home Servant.

Once Agis gives the green light, then Herman can add the voice recognition, the Home Servant for which we will pay, it will be well worth it to be able to keep communicating.

Today I also got the annoying news that Aquarius had only just sent in their bid, for the bed support to Agis, Kees was here on 5th November, he knew i need this urgently, yet took 24 days to send the bid.

Welzorg have recently taken over the company, and immediately the quality has gone, shame for Aquarius and their employees who had such a good reputation.

After getting upset at how annoying it is to have to constantly put up with such treatment it is intensely frustrating and rather annoying, I decided to keep calm and positive.

Monday, November 28, 2011

It seems life is not going to get easier; on the contrary, it’s got more complicated, last Friday I got told my requested software had at long last been agreed by Agis.

I heard at the same time; I should let them know who the supplier would be, I did this right away, through the website, their phone lines were just too busy on Friday.

This morning, I phoned, in order to be sure my message got to the correct department, sadly

Agis’s computer system was down, so I got asked to phone again this afternoon.

Melissa said to phone back at 15.00, she thought the computers would be working by then; she was pleased when I commiserated with her about having to start her week like that

Apparently I was the first person to be sympathetic to her; this was at 11.00, when I called

back at 15.00 I could finally leave my message; an hour later I got called back.

I was told they only had one bid for the contract, it wasn’t HEServis, it was RTD Het Dorp, who I thought were giving the second opinion not hijacking the contract.

Two weeks ago when Frans was here to give his opinion whether I should get it or not, was I handicapped enough, I was led to believe he backed the application.

It seems he left here, went away to draw up his own bid, seemingly undercutting the other bid, so I do not get the excellent package put together by Herman from HEServis.

Instead I get an old system, with fewer possibilities, only one language, I speak three, I use all three. I hope my occupational therapist will be able to sort this mess out soon I need Seetech right now.

Saturday, November 26, 2011

Amazing scenes of incredibly brave people who despite many being shot by the police and the army are still demonstrating in Egypt’s Tahrir square.

This time against the military who have been in charge there for 60 years, the Egyptian people rose up, in January against President Mubarak’s regime.

He went, the military didn’t, they are still there ordering the tear gassing and shooting, to kill, maim, frighten the population into submission.

The reasons there are so many brutal, corrupt governments, is that so called ‘’democratic’’ governments, our governments have kept them in power.

Countries seem to find these dictators easy to do business with, regardless of the desperate situation of the people.

Russia supports Syria, it gives them strategic ports, and Syria is supported by Iran so China supports Syria too, USA supports Egypt its an important strategic ally, they support Bahrain who gives them ports, which is why they do nothing to stop the brutality there.

Tunisia was the spark that ignited the struggle for self determination, for Mohamed Bouazizi in Tunisia; self immolation was his only way to protest against the extreme corruption.

Friday, November 25, 2011

Today I heard that the application for Seetech software has been given the thumbs up by my health insurance.

Good to know that this has now finally been agreed to, not before time too, feels like I have been waiting forever.

It just feels like centuries, everything does when you apply to burocrats for it, and this is when I wish I were rich.

The good news is, I will get Seetech, and the bad news is that Frans, from RTD Het Dorp will be supplying it.
I am astonished, had thought he was just giving his second opinion, not hijacking the order.

The thought of Frans installing the software and giving me instructions how to use it was too horrible, that upset me even more.

I wrote to Herman to express my disappointment, that his company wouldn’t be the supplier.

He wrote back, telling me, I could still choose the supplier, which I thought I had done, but the second opinion obviously disrupted this.

When I heard that I could chose who delivers the software I immediately contacted Agis, my health insurers via their website, phones too busy on Friday.

To let them know Herman’s company HEServis is the supplier I chose, I will check with them on Monday.

Wednesday, November 16, 2011

Glad I managed to handle the appointment yesterday so well,
it gave me a boost; I am pleased that Richie and I made it clear how we felt
about never getting aids on time.

It was rather annoying to have that arrogant man,
Frans, from RTD Het Dorp, telling me what I am experiencing, and what I should
be able to do.

He told had me that I needed a smaller joystick, that
would work well, and I should be able to steer my wheelchair without any
problems, but he was not here to discuss my wheelchair.

I pointed out that my arm muscles are much shorter now
so I can’t stretch my arms out to hold the joystick, so a smaller joystick wouldn’t
be any use to me.

He had no idea, so was surprised when I mentioned how
my arms get so tense, cramped sometimes they get forcibly folded across my chest,
not good if trying to steer my wheelchair.

He was here to give his second opinion on why I needed
the Seetech software, but being ignorant about MS, but also very opinionated he
had to start telling me what I was experiencing.

I told him that he had no idea, that I know exactly
what I am feeling and what I can do and what I can’t do, and I did not need him
to tell me amazingly he listened and was gratifyingly quieter afterwards.

Astonishingly for someone who has been supplying
software for the disabled for years, it was clear he had no idea; and not a shred
of empathy or understanding of what it’s like to be handicapped.

I hate to think of what he must be like with other handicapped
people who are not able to speak up nor have support from Richie like I have.

Tuesday, November 15, 2011

Today I had an appointment with Maurits, my occupational therapist and Frans, from RTD het Dorp, to give his second opinion, whether Seetech, the software operated by eye movement was justifiable for me.

I saw Frans once before in February, when he dominated the room, loomed large over me, he stood just behind me, almost shouting in my ear.

Patronising me in a bellowing voice, not listening for a second, to why I needed what I needed, if he had he would have understood that in February I needed Seetech.

It would have been good to have been able to learn how to use it, before my index finger finally stops functioning; which is happening now.

Today Frans tried to patronise me again, started lecturing me again, after awhile I couldn’t handle sitting there having him tell me what I could do and what I needed.

So I told him that I knew exactly .how my condition was, I could feel only too well how my arms were getting very heavy, difficult to move, that I recognised paralysis was happening

Basically that I needed the Seetech software now, Richie backed me up saying that it was time that I got what I needed on time.

Richie said that there have been too many aids given too late that I could not use, that were no longer useful as my MS had progressed again, he said it was time to be proactive.

After that Frans finally got down to business writing down all the things I had tried, that he need to use in his second opinion backing up my application for Seetech.

Sunday, November 13, 2011

Yesterday,
Richie and I were talking about how my MS diagnosis in 2006, has had a
big impact on our lives, how it has totally changed our lives.

Our
lives as we knew them then, was over, one thing it has no effect on is
on us, on who we are, before my diagnosis I was looking forward to
getting old with my darling Richie, now I look forward to seeing him
again everyday.

That is why my blog is not just about ms; it is
about the things that I can't do any more, things I encounter, like the
frustrations of dealing with companies like Welzorg, but also of
helpful people.

My blog is my daily diary of the pain and
discomfort of ms but it’s also about the pain and suffering that I read
abut in the newspaper and see on the TV screen.

Like seeing the
man covered in blood running up the middle of the road in Syria shouting
they are killing us, and in the next moment he was killed on TV, we saw
this on Dutch TV.

He looked like someone I knew, called Hassan,
who owned a falafel shop, he used to give us squatters extra, seeing
this man killed cold-bloodedly on the TV was upsetting, I shall never
forget him.

O n the BBC TV we saw the desperate lives of a group
of people in Zimbabwe, small children, who should have been at primary
school.

Doing everything to earn money to feed their families and
to pay for themselves to go to school, everyday they did n ot succeed,
it was heartbreaking viewing.

The desperate situation in
Bahrain, where doctors and nurses have been tortured and sentenced to
long prison sentences for practising medicine.

Hopefully their
sentences will be repealed as other countries express their alarm about
the high level of state repression, other African dictators are quite
rightly worrying about maintaining their status at all cost.

Wouldn’t
be good if people could finally be able to live in peace and harmony,
without manipulation by dictators who are kept in power by our
‘’democratic’’ governments.

The
opposing view is that time does not refer to any kind of
"container" that events and objects "move through", nor to
any entity that "flows", but that it is instead part of a fundamental
intellectual structure (together with space and number) within which
humans sequence and compare events. This second view, in the tradition of Gottfried Leibniz[5] and Immanuel Kant,[6][7] holds
that time is neither an event nor a thing, and thus is not itself
measurable nor can it be travelled.’’

Time is very interesting not just to measure it, as a
child, I found that time behaved differently depending where I was, at school time
was always slower.

Playing with friends meant time seemed to fly by even quicker;
time at school never went by as quickly, mathematic was the slowest, longest hour
ever.

How often I wished it were the only way around, the
maths should have been shorter and time with friends should have been much,
much longer.

But I guess its all really how time is perceived,
something that I enjoy always goes by faster than things I don’t like such as time
at the dentist or in a mathematics lesson.

Examinations always seemed to last longer than my
birthday, these days now I am older time flies by, again that is just my
perception.

Time like life is all about perception, being positive
gives everything a different look than being negative; I prefer to view life positively.